So tired of hearing "she's fine"

My daughter Payton Marie was diagnosed on December 5th of 2011. We discovered the problem when we brought her into the doctor because of her extreme bruising. The CBC came back with her platelets at 21k, we immediatley rushed to Arkansas Children's Hospital. By the next day she had dropped to 19k and they diagnosed her with ITP. Over the next few weeks her platelet count started to rise. She got all the way up to 62k. Now we have gone down again. She is currently holding steady at 18k, for the past two weeks. Her doctor is taking the "wait and see" approach. She won't give her any type of treatment, and doesnt want to until she drops below 10k. And then she wants to remove her spleen. I am having a difference of opinion. I just dont see why a doctor wouldnt want to start out with the least invasive treatment. I'm scared every second of every day, I am to the point that I dont want to send her to school. I dont see what it would hurt to try Payton on steriods. I would kill for a moment of peace. I need your opinions....

Take heart because many doctors, most doctors in the UK and some other places, don't treat children at all unless there's serious bleeding issues, and they do just fine. Adults tend to be treated at a count under 10 or so, so your doctor, despite being splenectomy crazy, is spot on so far.

All the usual treatments are worse than the disease so given the choice, it's best not to treat. Having taken steroids for my own ITP, I know how horrible they are so if you can hold off that for your daughter, you are doing her a big favour.

The most up to date international guidelines are at bloodjournal.hematologylibrary.org/content/115/2/168.full with the management of children nearer the bottom.

Not being treated is probably good. Good doctors (especially children's doctors) don't treat unless there is bleeding which is beyond bruising or petechiae - like wet purpura in the mouth, nosebleeds that won't stop after 1/2 hour, blood in urine etc. Some of the treatments are horrible - IVIG for my son was worse than low platelets ever were. I know its difficult to live with the worry sometimes, but watch and wait is a perfectly viable option for some kids.

Splenectomy at this point however, is just stupid. About 80-90% of kids grow out of ITP within the first year, so to think of doing anything irreversible before this is crazy. If she drops below 10, steroids or IVIG would be sensible options. Then, if after a year, your daughter was still having significant problems, THEN you could maybe talk splenectomy with your doctor (we've got to the three year point now and are still not even contemplating it).

Second opinnion - just a thought, could you do a skype/internet consultation where you sent over all her test results first? I don't know what doctors do in the states, but its maybe worth a thought?

Ali

I remember all too well how it feels to just want your child to have a safe, normal life without restrictions on ordinary activities, and without constant worry. I told someone ITP was like a bear in the living room. We were expected to do all the normal things: work, school, church, extracurriculars, make sure the bills were paid, the house was clean, the meals were cooked, and, "Oh, Mom and Dad, by the way, there's a bear in the living room. Make sure it doesn't eat your kid." My daughter was unhappy with her restrictions. I was stressed to the breaking point and I just wanted her to truly be "fine." My daughter was almost 13 years old when diagnosed, raising the odds that she would be "chronic." Normal is possible, however, and may come your way, as it did ours. My child went into remission about 15 months after diagnosis, and started having always safe, sometimes normal, counts. (We had done mostly watch and wait. Steroids cause their own problems, but we tried decadron pulse, and she used pred to prepare for oral surgery. IVIG was her rescue treatment.) Now, almost five and a half years after diagnosis, she runs counts from the high 100s to the mid 200s. We still check about every six months, and occasionally at other times when she is ill with a sore throat or sinus infection. My daughter still has her spleen to help her with illnesses, and I am grateful for that. Splenectomy is often not a cure, and certainly not a permanent solution. Many ITP adults have come onto this site to mention a recurrence many years after losing their spleens. There are rescue treatments for counts under 10. If your hematologist won't try those and insists on splenectomy, seek a second opinion. We were blessed to have wise hematologists, who actually communicated with us. (Communication is not just talking; it requires listening, too.) Good luck.
Norma

I wouldn't consider a splenectomy. Get a second opinion. She may bounce back, it's much too early now.

I totally understand! My 4y.o son was diagnosed in Oct 2011, after we noticed severe brusing on his body and the evidence of being hit on his arm (by a preschool teacher!) We got the call from his GP to go immediately to the ER as his count was down to 20 (taken two days prior). when we got there it had gone down to 18!
so began the ritual of going to hospital for bloods every two to three days for a month, then once per week for the next two months.
Now, after 6mths his count has finally climbed to 93, but is stable for the last three weeks. His count went up and down a lot in the first four months and went above 35 only once!
I just want to reassure you what my initial consultant doctor said to me - "isn;t the best treatment, no treatment?" I struggled with that, because as a mum you want to protect and heal your child immediately. However the disorder is such that it usually resolves on it's own.
I swear by naturopathic advice, and also a wheat free and dairy free diet. From my understanding ITP is where the immune system goes mad and starts killing its own platelets. That sends off alarm bells for me. Such as, "is there iflammation in the body?", "what could be causing inflammation?"
I noticed my son's behaviour was very agressive, and he was having trouble with generally following what we ask of him.
So i decided to limit his sugar, and wheat and dairy intake, and sure enough his platelets started to rise. I am not saying this is the answer for everyone, but i definitely think this is part of his answer. We also take him to a chiropractor once per week to ensure his central nervous system is functioning as well as can be.
I hope that you will be able to enjoy less stress around this disorder? It certainly freaked us out, but we have learned to be vigilant, without being stressed. We took him out of preschool, and now that he is close to 100k, he is starting next week. We stopped taking him to parks, trampolines, and engaging in rough play with other kids during his more serious phase. Now, we are slightly loosening the reigns.
Good luck!

bellef2005 wrote: I noticed my son's behaviour was very agressive, and he was having trouble with generally following what we ask of him.

Maybe your son was feeling bad simply because his platelets were low. Low platelets do cause many to feel fatigued and unable to do the normal day to day things. As the ITP naturally resolved he would have started to feel better and therefore have been more co-operative.

Why does that fact that the body starts making antibodies against the platelets make you assume that there is inflammation? Why inflammation? Where does that connection come from?

I GOT MY SECOND OPINION Payton dropped to 13k Thursday so we went to Arkansas Children's Hospital and she recieved IVIG Friday night. Today her platelets came back at 454k!!!! She had a few minor side affects but it was sooooooo worth it! Just trying to keep the hope that they will stay up! Thank you all for the advice!

"Maybe your son was feeling bad simply because his platelets were low. Low platelets do cause many to feel fatigued and unable to do the normal day to day things. As the ITP naturally resolved he would have started to feel better and therefore have been more co-operative." I TOTALLY AGREE

I guess my connection comes from the fact that when i spoke to my specialist regarding his tiredness and irritability, she said that it wasnt connected (she is the #1 specialist in Australia by the way.) So, even though that felt ridiculous to me, i needed to investigate other causes. Myself, i am intolerant to wheat and dairy (which came on in pregnancy), so have assumed that he too may be.
With that in mind, if he is eating foods that are "inflammatory" or not assimiliated well to his body, then it could lead to an autoimmune repsonse.
now, he is refusing wheat and dairy even if offered, and his behaviour is much better - but his platelets are neither going up nor down. we are now looking at other foods that cause an inflammatory response, like salicylates (i am intolerant too).
Not labelling him with my intolerances, but given the family history, we feel it is necessary to investigate all of it gradually.

I got a second opinion for my four year old son, and I am SO GLAD I did! Every doctor has a different mind set and a different approach. Glad to hear you got another opinion. We also treat with IVIG, which he responds so well too! With each treatment we are getting a longer and longer window of time with a stable count. It's taken some time, but now we are going on 10 weeks since last treatment! I hope IVIG continues to work for you!

I wanted to update you on my son's latest results.....186K!!!

So after 6 weeks of a pure Wheat - free diet, he is now out of the danger zone and in the normal range. His brusing completely left about 1mth ago, his behaviour is 100% better, and life in our household is calm, ordered and lovely.
You can imagine my shock yesterday when i received such a great result from the specialist!
Her first comment to me was "What have you been doing?", as his platelets have climbed so dramatically fast.
I am the first to admit that the medical specialists would be retiscent to say that his wheat-free diet had anything to do with recovery. I however, am absolutely certain this helped, and will continue to keep this diet for him.

I have been in your shoes. My Daughter Brianna has ITP also back in Oct her Platelets dropped to 22 they admitted her to hospital and just did the wait and see game at that time they went back up on there own. We went in for her regular once a month blood work 2 1/2 weeks ago and her count was 3 they did the waiting game once again to see if she could do it on her own like before but she never they left her for a week doing blood work every 2 days and the last day she was down to 2. Then the Doctor said we are going to try her on IVIG it was worth it her count last monday was 137 and thats the highest it has been in a year. But she has been having some of the side effects of ivig but she tells me she will keep doing the ivig if it means she can be out playing basketball with her friends. but i know the wait and see game is hard and its hard on the kids to